Organ transplant survivor learns to walk again

Linda Joyce Brown enjoys her annual winter trips to Florida with her husband. But this year, her deteriorating health put her vacation plans on hold.

Linda needed a new liver. In November 2009, she had life-saving liver transplant surgery at Toronto General Hospital.

The surgery left her very weak. She couldn't use her muscles. She couldn't walk or stand, and had trouble speaking. She needed intensive therapy and support to get back to active living.

"I needed a lot of physical attention in order to get better," says Linda. "I knew at St. John's Rehab I would get the daily regiment I needed to recover. I knew it would be good for me."

St. John's Rehab offers the only specialized organ transplant rehabilitation program in Canada. Developed in 2004 in a joint endeavor with the Multi-Organ Transplant team at University Health Network's Toronto General Hospital (TGH), the program focuses on the unique needs of patients recovering from heart, lung, kidney, liver and other transplants.

The program provides six inpatient beds, serving about 60 patients per year. Since its start, more than 300 patients were admitted to the organ transplant program.

The patients work hard, but the idea behind the program is simple: to ensure patients get the right care, in the right place, at the right time.

Organ transplant operations are major surgeries that require time for recovery. A transplant patient may require specialized rehab because of a lengthy and debilitating illness before surgery, a suppressed immune system because of drugs that inhibit organ rejection, loss of muscle mass, and other complications caused by disease or decreased activity.

The St. John's Rehab team provides intensive therapy tailored to each patient so that he or she can recover physically, emotionally and spiritually. The interdisciplinary team includes physiotherapy, occupational therapy, medical care, nursing, social work, pharmacy and spiritual care.

"Following organ transplant operations, people require support for physical and emotional recovery," says Linda Nasturzio, Inpatient Services Manager for the program. "Our program is customized to help patients at all stages of recovery maximize their independence, mobility and endurance."

The program also emphasizes self-care and helps patients successfully return to their daily activities, families and community. Rehabilitation services for organ transplants also include outpatient services such as education about diet, exercise, proper use of medication and social and psychological support.

In partnership with TGH, St. John's Rehab is conducting a progressive study on the importance of organ transplant inpatient rehabilitation. The goal of the four-year research is to determine outcomes in organ transplant recipients following inpatient rehab and to document the successes between St. John's Rehab and TGH since the program started. St. John's Rehab researchers are tracking data on patients' length of stay and when they are discharged. Researchers are also recording patients' functional measures using the Uniform Data System for Medical Rehabilitation's (UDSMR's) FIM® instrument (Functional Independence Measure)*.

The FIM® instrument is a tool used by health professionals throughout Canada that helps analyze data on patients' functional abilities and independence at a specific period of time. Analyzing the outcomes of patients' rehabilitation helps set a basis for continuing or modifying courses of treatment. Researchers believe that tracking this type of data will show that rehab for transplant patients is just as effective as rehab for other types of patients.

"The study also highlights how this unique partnership allows each institution to capitalize on their expertise and help patients recover," says Dr. John Patcai, specialist in Physical Medicine and Rehabilitation and researcher.

The partnership offers solutions to managing transplant patients' illnesses, their stability and impairments, and the logistics and transportation needs during the program of care. The partnership's work in these areas has made patients' recovery more efficient

Examples of solutions include the Urban Telehealth program. Using video conferencing, patients have easier access to follow-up care during their rehabilitation after surgery. Rather than travelling to Toronto General Hospital for medical consultations, patients at St. John's Rehab can meet with physicians at TGH through a virtual clinic visit. The system lets physicians and patients interact via wall-mounted video conferencing screens at both hospitals.

The partnership also helps reduce wait times and addresses issues of bed shortages in acute care. Toronto General Hospital can continue to focus on saving the lives of the increasing number of new transplant patients that come through its doors each year. At the same time, St. John's Rehab delivers customized complex rehab care for patients to help rebuild their lives.

For Linda Brown, it meant getting back to her life with her family.

One of her biggest goals was to get out of her wheelchair and walk. With the support of an interdisciplinary team of rehab professionals including an occupational therapist and physiotherapist, Linda achieved her goal of walking and regained strength and independence. Just a few months after her surgery, she flew to her vacation home in Florida with her husband.

"I'm an independent person," she laughs. "I was determined to get things back to normal and join my husband on the beach. It's a long recovery process, but I feel stronger every day."

According to the Ontario Trillium Gift of Life Network, more than 1,600 Ontarians like Linda are currently on waiting lists for life-saving organ and tissue transplants. Yet, only 17 per cent of Ontarians with health cards have registered themselves as organ donors. Please register your consent to be an organ donor today.

* The FIM® instrument, data set and impairment codes referenced herein are the property of Uniform Data System for Medical Rehabilitation, a division of UB Foundation Activities, Inc.